Those of us who are ALK+ (alkies) have a Facebook group (ALK-I.E.S. Worldwide–it is a closed group–limited to those who are ALK+, message the moderator for permission to join) started by Tom Carroll and his wife Merita (Merita is the patient/mutant). This group operates as both a forum and a source of support, and has a growing membership of ALK+ patients and their caregivers which is worldwide.
Earlier today one of the members asked for the link to a story I appeared in some eight years ago, on June 2, 2009. They were inquiring as they’d been introduced to Bill Schuette, another ALK+ patient, and he had referenced this particular news story while talking about his own cancer journey.
I found the link, which was kind of fun as I had not watched it in years. More fun still, in the ensuing online conversation we learned that Bill provided essential information to another alkie, Catherine, who in turn helped Jeff, also ALK+. Bill himself joined our conversation and provided a link to a video he made at MGH. Watched in conjunction, our two videos are such a splendid example of how media has the (exponential) potential to help someone else. And social media serves the same purpose–as we make connections and share information and resources.
Linnea and Bill. Connected 🙂
In late May, I got a phone call asking if I would appear in a report being filmed for ABC World News. This coincided with the annual ASCO (American Society of Clinical Oncology) meeting in Orlando, and the focus of this meeting was personalized care. A producer for ABC had seen a story about my treatment at MGH that was published in the Boston Globe on March 3rd, 2009 and felt that it was a good illustration of this approach. Over a period of two days, a crew filmed and interviewed Dr. Leif Ellison, Dr. Alice Shaw (my oncologist) and myself. The piece appeared on the ABC World News with Charles Gibson on June 2, 2009.
My brother John and my sister Bink were visiting us the night it aired. Seeing the before and after CT scans of my lungs, broadcast around the world no less, was pretty amazing.
It generated a lot of excitement among other lung cancer patients as well, with the hospital receiving over 2000 phone calls. Only a small number of these callers would fit the genetic profile required to enroll in the PF-02341066 trial and therefore, many were disappointed. That “now you see it, now you don’t” image of my cancer was something that so many people were looking for.
There are two things I should clarify. The first is that only approximately 4% of lung cancer (NSCLC) patients test positive for the ALK mutation. Given how many individuals are diagnosed with lung cancer (219,000 in just the United States annually), this still represents a significant number of people. For those who don’t have the ALK mutation, there are therapies that target EGFR (10% of people with NSCLC)) and K-RAS mutations (15%). But I feel the most important thing to realize is that this is the beginning, the tip of the iceberg if you will, of a radically new approach to treating lung cancer and, cancer in general. As researchers continue to explore the genetic underpinnings of cancer, more targeted therapies will emerge. The hope is that some of these treatments will prove to be not only effective, but also that the side effects will be much more manageable than traditional chemotherapies. Quality of life is every bit as important as quantity of life.
The second point is that the treatment I am receiving is not a “cure” for cancer. My cancer is being managed or controlled. This is still absolutely amazing. I have terminal lung cancer, and yet I continue to live. And I believe I will, for at least several more years, something I couldn’t have said prior to starting this treatment.
And now a story about what we are all really looking for in life. My daughter was googling my name and came up with a blog post from July 12. Sadly, Farrah Fawcett had just passed away after a protracted battle with anal cancer. The person writing the blog had seen the ABC news piece and wrote the following:
“Here’s the link to the ABC News Video on YouTube on their “Personalized Cancer Care” report. It shows the promise of smart drug chemotherapy and genetic profiling. The woman in the video who finds her miracle cure is Linnea Duff. I was hoping that Farrah would be the next Linnea Duff.”
Well. When I started college in 1977 the poster of Farrah and her thousand watt smile and her red speedo was on the wall of more dorm rooms than I could count. Never would I have thought that some day we would be mentioned in the same sentence. Unbelievable that now I possessed something that was unattainable for Farrah: more time.